More Than a Movie..

My fascination with movies started in 1978 when I saw Close Encounters of the Third Kind – a film about aliens, aptly enough. I remember feeling scared, not about the movie, but of everything around me. The crowds. The smells. The cacophony of voices. The familiar feeling of wanting to be sick. The fear of vomiting in public.

I also remember the feeling in my chest as the lights dimmed and the cinema screen flickered into life for the first time in my life..

Cinema was very different in those days and for the young (and undiagnosed) autistic me it made for a conflicting experience because of the queuing, crowds, uncomfortable seating and divs using the back of my chair as a foot-rest. Not to mention the aroma of hot dogs and cigarette smoke! That said, once the film started I was able to lose myself in the fantasy – providing my bladder wasn’t too full, that is.

In contrast, last week I went to see The Crimes of Grindleward – a completely different experience because all of the above (aside hot dogs) has been eliminated. Even crowds, if you choose the earlier showing times.

I’d imagine that a lot of autists love watching movies, either at the cinema or at home. That’s because being able to lose ourselves in fantasy helps to make existence on this confusing planet a little more bearable, no? And when it comes to the wizarding world, I’d guess many autists identify with the ‘non-magical’ versus wizards’ concept because it’s not dissimilar to the NT versus autistic one.That’s not to suggest that we have magical powers, because we don’t. Unless you consider photographic memory a superpower? Or that there is a war between autistic and non-autistic. It’s just that ‘No Maj’s’ don’t understand the wizarding world and vice versa.

There are many autistic traits to be found in the Harry Potter/Fantastic Beasts films. I mean, Newt Scamander has many Asperger traits, despite no affirmation from J.K Rowling. Then again, the film is set in the 1920s so Newt wouldn’t have been diagnosed anyway. And while it can be said that Harry Potter himself isn’t an autistic character, one can empathise with the range of emotions he goes through when Hagrid informs him that, actually, he’s a shit-hot wizard and those things about himself that he never understood – such as his hair growing back overnight – suddenly make sense which is not dissimilar to receiving an autism diagnosis.

Aside the film itself, I consider the credits to be an important part of the experience, but time and time again I find that I am the only person remaining in my seat as the last credits scroll up. It’s always the same. The end of the film comes, the soundtrack kicks in and there’s a flurry of activity with people standing up, coats being put on and a general mass exodus towards the exits. Some people hang on for the crowds to disperse and then they get up and leave which just leaves me..

I always watch the credits. One reason is that I like to see the names of the people who made the film possible. Another is that I’m a music fan and there are often several pieces of music of soundtrack played during the credits. Also, there is often something extra mid-credits or at the very end. Some movies use bloopers and in others the post credit scenes are a crucial part because it ties the movie up or leaves the audience (or who ever is left) in a state of anticipation.

*SPOILERS WARNING* At this point I’m going to use UP and Christopher Robin as examples so if you haven’t seen those films and would like to, please scroll down beyond the italics.

In the case of the animated film, UP, the credit scenes flip through Carl’s photo album and we get to see the adventures he has with Russell and Dug. As we see in the film, this is what Ellie wanted him to do after she was gone. Blended with the beautiful (and award-winning) score by Michael Giacchino these scenes brings this movie to a pleasing end. Everything is tied up and you leave the cinema feeling happy.

A more recent example is Christopher Robin where, after a few minutes of credits, there is a little sequence where all the characters are having a dance and a sing-song on the beach where there is an old man playing a piano. The old man is no other than Richard Sherman, a nine time Oscar nominee and writer of some of the most memorable songs Disney ever made. It’s a sweet touch and one that many people never got to see because they left the cinema as soon as the credits started to roll.

If I hadn’t stayed for the Fantastic Beasts credits, I wouldn’t have heard the fantastic soundtrack. Or learned that Mr Depp had a small army of people pandering to his every need. Or that his scary contact lens had its very own technician.

Then, there’s the flip from fantasy to reality..

I would happily sit in the empty cinema long after the credits have finished because I need time to adjust from fantasy to reality. But that’s not possible when the cleaners are giving you the evils because they can’t start cleaning up until you’ve shifted your arse.

In my younger days, I would go home and reenact everything I saw and then I would work the characters into my world using their phrases, mannerisms and style. I know now that it was part of masking – of being somebody I wasn’t because I couldn’t be myself. In those days, I was more out of this world than I was in it – something which my mother would testify to, if she were alive. She always said that I never seemed to be here. She was right. I was far, far away..

I wish I could take the credit for this quote, but it comes from a fellow autist in response to an online post I made about staying until the very end of the credits. I think that many of us will identify with it.

Earth is simply where my body is tethered…

These days, I don’t go home, shut myself away and reenact. Those days ended when I realised that nobody else I knew did such a thing – not on their own anyway. Drama was never an option for me due to my social and communication problems. Not to mention, crippling anxiety. Any enjoyment of being able to become different characters would have been lost in the discomfort of everything else. And so it’s down to music, literature and the movies to take me away from life.

In the cinema, the endorphins flood my body. The feel good hormones. The ‘I can fucking do this‘ hormones!

Then the experience ends. I push open the exit door and reality slaps me in the face with atomic force.

The anxiety. The weariness. The disconnection.

I’d give anything to turn around and walk back into that darkened room because that room is my wardrobe into Narnia. It’s a portal to another world – a world that understands me.

Knitting to Relieve Anxiety

When I was little, I asked my mum for a knitting set. I can’t remember why I deviated away from my usual Enid Blyton books. I just remember that I did. I also remember not knowing what to do with it once I had it. Nor was there anybody at home who could teach me. Needles (intentional typo) to say – the set was relegated to the back of my wardrobe and eventually to the local jumble sale..

Fast forward a couple of years to primary school *twitch* to where knitting was compulsory. Sadly, any interest I had in learning the craft was over-shadowed by my debilitating anxiety..

Our first task was to knit a hat or mittens. We got to choose which so I chose the mittens. The other children were able to get on with their knitting but my brain wouldn’t retain the information on the paper in front of me and I was too embarrassed to admit that I didn’t always understand the instructions and I was too anxious to ask for help.

I understand now that it’s virtually impossible to learn a new skill when overwhelmed with anxiety. But in those days nobody knew that I was autistic. Not even me.

Eventually the weeks passed and we moved onto needlework. More needles! Oh. Joy.

This time I ended up being made to stand on my chair as one of the more sadistic teachers ripped my work to shreads (literally) in front of the entire class. Not for the first time in my life, I was humiliated. And it wouldn’t be the last time either. It was, however, the last time that I would be obliged to knit or sew as those crafts would become optional in high school.

On the negative side, metal and wood work were compulsory and I was shit at those too. 😦

Ten years later, my mother-in-law encouraged me to try knitting again and soon we spent many a happy hour knitting and nattering. It’s thanks to her that I was able to fall in love with the craft and overwrite those horrible memories of school.

40 years on from scholae horribilis, I can whip up a scarf or even a jumper as long as it involves the words ‘easy knit’ on the pattern. However, the problem with easy knitting is that it can be done on auto-pilot which means that there is plenty of room for Captain Crazy and the Psycho Platoon to march into my mind.

Knit. Knit. Knit. What’s that pain in my chest? Knit. Knit. Knit. What if I have a heart attack? Knit. Knit. Knit. What if the door is locked and the paramedics can’t get in? Checks tension. What if I can’t reach my phone? Knit. Knit. Knit. Is that asprin is in date..

You get me?

I figured I needed to challenge my brain, but patterns freak me out as numbers and sequencing = vacant face, though the common term is Dyscalulia.

The good news is that I was blessed with a stubborn-arse streak as well as my autistic brain. So last week  I found myself sauntering (I don’t saunter, but I like the word) over to the cash desk in the local craft shop clutching two balls of wool and a pattern for a fairilse hat. Yes, fairilse. When I go for it, I really go for it!

Long story short: it took me TWO DAYS (and much effings) to complete ONE INCH of effing fairisle, and that includes unpicking the effing thing SIX EFFING TIMES!!

The only way I could do the pattern was to write it down on note paper in a way that my frazzled brain can cope with. For instance, the pattern is twelves stitches (repeated) so I broke it down into three lots of four and ticked them off as I went along. I also have a stitch counter which is veeeeery stimmy. *drools*

Doing the pattern was time consuming but I was TOTALLY engrossed in what I was doing – therefore – no room for anxious thoughts. It means that the cycle of crazy thoughts was broken and that can only be a good thing. 🙂

For me, knitting is a very sensory experience and when done in a relaxed manner, it can be very beneficial to our health as well as our wardrobe. And it’s stimmy. While I’m click-clacking with my needles, I am not picking the skin off my lips. Or scabs off my skin. I know. I’m grotty innit?

I also like the different colours of the yarns because I am a colour freak. Me and colour is like tin foil to a cat! I recently had to prompt myself to move from in front of the Sirdar multi-coloured range as I was starting to drool. That, and the owner of the shop was giving me a funny look..

I especially love those yarns that change colour. It’s almost magical I tell you! But most of all is the sense of achivement in having created something that is not shite. It makes up for never having finished those frickin’ mittens at school. *TWITCH* Or everything else that I was unable to do or complete because of my anxiety.

Cor!

Knitting won’t cure me of my anxiety because I can’t change the rest of the world to suit me – as amazing as that would be. Anxiety is hardwired into me, along with autism. But I can see how it could cure anxiety in the non-autistic brain so maybe it’s worth digging out those long forgotten needles that have been gathering dust in the back of your wardrobe?

As for the little knitting set that ended up at the jumble sale? Well, I hope it found it’s way into the home (and hands) of a child who created something beautiful with it and that it was the start of a lifetime of creating beautiful things while watching Coronation street or Eastenders. Warms yer heart doesn’t it?

Or it ended up in landfill which is just as likely, but not as heartwarming. 😀

“Properly practiced, knitting soothes the troubled spirit, and it doesn’t hurt the untroubled spirit either.”
Elizabeth Zimmerman

 

 

 

 

 

 

 

 

Now That’s What I Call Autism!

People of a certain age (*coughs*) will remember when a compilation album called Now That’s What I Call Music! came out in 1983.

I was 13.

What are we up to now? Now That’s What I Call Music 7509?

I’m almost 50!

No doubt, the multi-gazillion franchise will go on long after I’ve stopped breathing..

*Note to self* Record funeral mix-tape and call it, ‘Now That’s What I Call Being Dead!

The difference is that I could probably name all the tracks on the original album, whereas I couldn’t name a single track on the latest one. This is probably because I’m geriatric (not really) and geriatric people tend to live in a musical time-warp when they were youthful and had their own teeth.

I’m no music snob, but the auto-tuned, sampled-to-the-hilt crap that’s trawled out to the masses these days makes me want to hack off my own ears. What happened to pure talent? You could shove me into a recording studio with all its sorcery and I could could bang out a s(hit) record in three hours flat!

Granted, I would have to pay a body-double to do the bumpin’ ‘n’ grindin’ on the video, as that particular ship has sailed thanks to arthritic hips. Actually, I do grind, but it’s more of a ‘bone on bone’ thing which isn’t as arousing, especially when it’s combined with the stench of Deep Heat.

Anyway, back to Now That’s What I Call Music or as my dad used to call it, ‘That’s What I Call a Load of Crap!’

So, some of us bought (or were bought) Now That’s I Call Music on vinyl (album, not flooring). The rest of us pestered our mates/siblings to borrow it, which they did, albeit reluctantly, and only after issuing a warning of certain death if said album was returned to them with any defects, such as scratches or tea-stains on Tracey Ullman’s face.

The beauty of cassettes was that you got to spend hours of your life jamming biros into cogs trying to wind the b@stard tape back in. Remember that? Happy Memorex, eh? See what I did there? I’ll get my coat!

In the spirit of those bygone times, I present to my fellow autists, a mix-tape.

Enjoy and feel free to add ‘requests’ via the comments section.

A Side

1. Don’t Stand So Close to Me ~ The Police (for the claustrophobics, obvs)

2. Move Closer ~ Phyllis Nelson (for the space-invaders)

3. Too Much Information ~ Duran Duran (social media overload)

4. Anxiety ~ Good Charlotte (‘I am anxiety free!’ said no autistic person. Ever)

5. Green Day ~ Minority “Stepped out of the line. Like a sheep runs from the herd. Marching out of time. To my own beat now”. (blog author adds: So, up yours, haters!)

6. Pushing The Senses ~ Feeder (I push mine round in an old Tesco trolley) Too literal?

B Side

1. 99 Problems ~ Jay Z (I got 99 problems but the Nintendo Switch aint one)

2. Heaven Knows I’m Miserable Now ~ The Smiths “I was happy in the haze of a drunken hour, but heaven knows I’m miserable now” (You get pissed, wake up and realise that everything is still shit)

3. 19th Nervous Breakdown ~ The Rolling Stones (currently on my 20th)

4. Spinning Around ~ Kylie (literally, though not necessarily in size zero hot-pants)

5. Communication Breakdown ~ Led Zeppelin -“Communication breakdown. It’s always the same. I’m having a nervous breakdown. Drive me insane! (self-explanatory, really)

6. Beloved Freak ~ Garbage ~ “People lie and people steal. They misinterpret how you feel. And so we doubt and we conceal” (adoring you from afar, Shirley Manson, but not in a criminal way)

Bonus track – Senses Working Overtime ~ XTC ~ “I got one, two, three, four, five senses working overtime”. (My senses literally never clock off!)

Autistic and Crap at Maths?

 

‘You can’t POSSIBLY be autistic unless you’re a maths genius!’

Another autism myth is that autistic people are mindbogglingly good at maths.

PLOT TWIST. I am autistic and I am mindbogglingly BAD at maths!

My dislike of maths started in September 1975. From the word go, it confused the hell out of me. Later on, the teachers started talking long division and fractions and my brain would go walkabout and fixate on shiny stuff stuck to the classroom windows. Or shoes.

Algebra. Sounds like a fungal infection doesn’t it? Or the green slime that furs up fish tanks.

I went to college in my twenties and scored high in English, but my maths score was THAT shit, they advised me to enrol in a maths workshop. I declined because the course I was taking was for working with pre-school children, so I had maths covered with my fingers and toes, but it got me thinking (and not for the first time) that maybe I was number dyslexic?

Dyscalculia

The condition is thought to be related to dyspraxia and dyslexia and occurs in people across the IQ range.

Typically, the signs of Dyscalulia are as follows.

• Confusing the signs: +, -, ÷ and x
• Inability to say which of two numbers is the larger
• Unusual reliance on counting fingers
• Difficulty with everyday tasks ie. checking change and reading clocks
• Inability to comprehend financial planning or budgeting
• Difficulty with times-tables
• Difficulty with conceptualizing time and judging the passing of time
• Problems differentiating between left and right
• Having a poor sense of direction
• Having difficulty estimating the distance of an object
• Inability to grasp mathematical concepts and rules
• Difficulty keeping score during games.

This pretty much describes me. I’d go so far to say that, in absence of a calculator (once I run out of fingers and toes) I’m pretty much fucked. Oh, and I do NOT know (and never have known) my times table.

Teachers have tried (and failed) to make me understand maths. My homework book had so much red ink in it, it looked like something from a crime scene.

notebook-2478554_640

I lived in fear of maths in general (double maths started my palpitations off) but especially maths homework. So much so, that I copied my friend’s once. Problem was, ‘Sir’ was so used to me handing in a pile of unintelligible crap that he instantly smelled Rattus norvegicus and instead of ‘See Me’, he wrote: Please bring your book to me in the next lesson to show me how you worked out the answers.

B.U.S.T.E.D.

Most maths teachers gave up on me. My ‘inability’ to learn combined with refusal to speak pissed them off – so they invariably left me to it.

One teacher tried more than most. I liked him because he was kind. He tried several ways to try and help me to understand mathematics, but each time I would stare at my paper or manically chew my pen-top. I can see his face now, turning around from the blackboard with a beaming smile, absolutely certain he’d nailed it this time..

Now, do you understand?

*vacant face*

He offered to give me lessons after school. As if THAT was going to happen? I think not!

So, he eventually gave up on me too.

This condition affects me in many ways, like driving. I can’t judge distance very well so I end up taking wrong turns. My Sat-Navs most commonly used commands are, ‘When possible do a u-turn‘ and ‘Route recalculation’. I also feel as I am going faster than I actually am. Or slower. Elsewhere, I have poor coordination – which explains why that step-class I took back in the 90s was a monumental embarrassment fest. Oh. The. Shame. *wafts hot cheeks*

Since my autism diagnosis, it’s become clear that I have many co-morbid conditions and I believe Dyscalculia is one of them, but at 48 (almost) is it too late to do anything about it?

I get by. Just. I use a calculator for the basics and for the bigger things, I ask someone else to do it. I’m not stupid, though I have been made to feel as if I am over the years. Someone told me I wasn’t very bright because I left school with no qualifications. That spurred me to go to college as a mature student and I passed my course (Child Care and Education) with merit, but I am undoubtedly impaired when it comes to maths.

Research shows that I am not alone. It is a difficulty that many autistic people have. It’s less common for dyscalculics NOT to have problems with reading and writing, but then I’m special innit?

I scored 86% in an online test, so it’s highly likely that I would get a diagnosis. I was offered support for this when I was diagnosed, so maybe I will take them up on it? I really don’t mind labels if there is some benefit to be had and in this case it would seem there is. If not for learning maths – the explanation for why I can’t do certain things. The latest being my son’s maths homework because it might as well be written in hieroglyphics for all I understand it, but I don’t feel quite so useless now I know there is a reason behind my struggles. It’s called dyscalculia.*

Hopefully this post has put paid to the myth that autism = maths genuis?

Dear maths, I am sick and tired of finding your “X”.

Just accept the fact she’s gone.

Move on, Dude.

* Dyscalculia on WordPress has red squiggly lines underneath it because it thinks it’s a spelling mistake and when you right click on it for options, you get ‘miscalculate’ which is pretty apt, no?

Autism: Confessions of a Skin-Picker

 

What’s Stimming?

Stimming is self-stimulatory behaviour. It is repetition of movement, sound or movement with objects.

It’s done for relief and pleasure.

Simplified: Stimming calms or stimulates.

Everybody stims, however, NTs have more socially acceptable stims and are more able to control them.

With an autistic person – stims are necessary to their mental health well being.

We stim to release tension or to stimulate ourselves.

Some people stimulate themselves to feel pain for pleasure, like my friend who liked to pull her leg hairs out one by one using tweezers.

*eyes are watering*

I didn’t know I was autistic until five years ago – so I’ve had forty plus years of generally hiding/suppressing behaviour that I now understand to be stimming..

It started with spinning where, as a small child, I would spin myself around until the butterflies danced in my stomach.  Then came infants school where there were boxes upon boxes of colourful (and tactile) objects that I liked to stroke or manipulate in my hand. Doing this soothed my anxious mind – albeit temporarily. I wasn’t interested in constructing things like the other children. Sod THAT for a game of conkers! I just wanted to sit in a corner and stroke stuff!

Speaking of conkers…

I like to touch them. (NOT a euphemism)

Then came the glue..

You’re probably reading this and thinking, ‘Glue? Oh my God, she’s a glue sniffer!’

Rest assured. I wasn’t (and have never been) a glue sniffer.

I may, however, have had a brief dalliance with Tippex in my high school days..

One of my all time loves is art and that love started in school. However, art was sensory for me. Visually? Great. Smells? Not so great.

I loved the smell of paint. Still do, but not when it’s combined with the aroma of curdled milk, cabbage and dried vomit as was the case in school. That said, I loved to create pieces of art so I forced myself myself to tolerate everything else..

The other sensory issue was that I almost pathologically HATED getting stuff on my fingers..

My mother told me that I was using a knife and fork a lot younger than my brothers were. She presumed it’s because boys are generally slower than girls? I think it’s probably because I disliked the feel of slimy food on my fingers. *shudders* This also explains why I find making pastry so unpleasant, hence, I avoid it wherever possible.

Whoever invented ‘Jus Rol’ has my unwavering adulation.

So, glue..

The first time I used glue – the stickiness made me anxious but I had communication issues so I wasn’t able to ask if I could go and wash my hands. I was starting with palpitations when THIS happened:

The glue dried and I discovered that peeling it off my fingers was quite possibly the best thing to happen to me since Enid Blyton!

I could happily lose myself in a glue-peeling session which made my school day slightly more tolerable.

Note: FFS don’t try this using Super Glue!

Glue-picking was the precursor to my most used stim – skin picking.

Yeah, a lot of my stims are gross.

When I was 21 I got chicken pox. Initially, this was crap because I was pregnant at the time. I was the size of Brazil with spots that itched like fuckery. I remember the one thing that people kept saying to me: ‘WHATEVER YOU DO, DON’T PICK THE SCABS!’

That’s like telling Mary Berry to stop baking and become a binman..

OF COURSE I PICKED THEM!!

I especially loved the scabs on my head because I would pull them ever-so-slowly through my hair which was, like, orgasmically pleasurable.

I’ve always picked my spots. And other people’s. Feeling that satisfying ‘pop’ as zit matter is released at high velocity? That’s right up there on the pleasure scale for me. Welcome to the pleasure dome mateys! I literally don’t understand how a person can have a big fat juicy zit and NOT want to pop it? Weirdos.

Downside is: I have scars.

LOTS of scars.

I also pick the skin off my lips. Sometimes with my fingers – sometimes with my teeth. NOT the best of stims if you like vinegar on your chips!

Zit slaying and lip picking are stims I try and save for ‘me time’ because even I know that it’s socially unacceptable to be pecking at yourself in public like a demented pigeon. Even so – sometimes I forget myself..

My bad, motherfunglers.

Rest assured that once I’ve acknowledged my skanky behaviour, I switch to a more socially acceptable stim – like fiddling with my cube/keys/phone/pebble/whatever.

Should I mention that I’m allergic to nickle so when I wear cheap earrings, my skin weeps, then crusts over? I guess you’ll know where I’m going with this so I’ll move on..

My, not gross stims, include rocking back and forth or side to side. I take more in when I’m rocking because I am less focused on my anxiety. It’s a gentle movement but if I’m having an anxiety crisis at home, it’s full on IN YOUR FACE back and forth rocking sometimes combined with manic pacing up and down.

Then there’s my fidget cube. I say mine. I may have nicked it from The Boy because his stim of choice is to chew his nails..

I also use a spinner which I like to spin near my cheek because I like how it feels on my face. No doubt, I’ll probably end up in A & E one day with a spinner-related facial injury..

NOTE: I’m trying very hard NOT to think of the scab..

Next, is my thumb ring.

Yep, I just lurve touching my ring.

Leaaaaaaave it.

I always wear one on my thumb which I manipulate with my index finger or my left index finger and thumb. It started off as me trying to give myself an edgy look? Then I realised that manipulating it calmed me down, so I’ve worn one for years. My current one is metallic rainbow colours so I get visual and tactile pleasure. Win and win!

I also LOVE soft materials. I wear soft leggings and stroke my legs, but not in a kinky way. I love blankets too – especially fleecy ones. They comfort me and keep my extremities semi-warm as I seem to be lacking blood flow in my hands and feet. Plus, under a blanket, you can hide from the world.

Also, people trying to sell you PVC windows. Or God.

Going back to pastry, I was once informed that cold hands make better pastry? So it’s a shame that I dislike the feel of it on my fingers or I could be the pastry queen of the North by now, no?

I get that I have some gross stims. I mean, picking my skin is pretty, er, what’s that word the young un’s use? Ah yes, ‘minging’ but it gets me through the day and through life. It’s not like I sit in Costa flicking my skin into people’s skinny lattes is it?

FYI, I am picking my lips right now as I’m editing this post for the 135th time.

Finally, people may tell you that stimming is offensive or unacceptable. The problem is with them, not you. Stimming has a purpose. It is part of the armory that we need to exist in this world. For this reason (and many others) it is perfectly acceptable to tell them politely, but with conviction, to eff off.

Me? I stim to calm myself and because it feels good.

 

 

 

 

 

 

 

 

 

 

 

Autism and Socialising

I avoid socialising like the plague because I am socially challenged, phobic, whatever. However, on occasion, I’ve forced myself to be sociable in order to try and fit in, often with disastrous consequences.

This was one such occasion..

Sometime in the 1990s

I found myself agreeing to meeting up with my work colleagues for a drink.

Needless to say, NIGHTMARE!

I don’t remember how I got to the pub. What I do remember is feeling all those fight or flight symptoms that my body produces when it thinks it’s in danger.

The danger of having to walk into an unfamiliar building.

The danger of having to locate my work colleagues without the aid of a mobile phone.*

The danger of having to act ‘normal’.

I walked into the pub. I was possibly only standing there for a few minutes, but it might as well have been hours. I didn’t know what to do. I couldn’t see any familiar faces. I was aware I was being stared at. Plus, my shoes were pinching the shit out of me. I was just about to adopt the flight aspect of the stress response when I saw one of my colleagues waving at me.

Flight was no longer an option.

There were seven girls including me. I say girls – we were all in our 20s but I was the oldest. I was also the only one who was married and who had children so I was already on a different ‘page’, as it were.

I refused a drink. This was met with some funny looks. I mean, who refuses a drink in a pub, right?

I sat fiddling with stuff in my handbag and concentrated very hard on not throwing up.

No doubt somebody offered me a crisp. It was a pub. People offer crisps. It’s what people do.

I’d have said: ‘No thanks’.

I’d have thought: ‘I’m actually struggling to swallow at the moment, so I might choke on the fucking thing and one of you might have to do that humping me from behind move to get me to cough it up. That or phone for an ambulance.’

Not that I overthink things at all..

I just sat there trying to nod and smile in the appropriate places, as you do.

After about five minutes (which felt like five hours) a man appeared in front of me, smiling, and said, “Hi, (my name) you remember me don’t you?”

All I could manage was a vacant stare.

I’ve had random people approach me in the street and say stuff like, ‘SMILE LOVE! IT’LL NEVER HAPPEN!’ so I wondered if this was one of those times?

Or maybe he was pissed?

The difference was that THIS man knew my name and was coming out with details about me.

My brain was working overtime trying to place this person. Why couldn’t I remember? What was wrong with me? Was I having a stroke?

What happens when I’m stressed is that my words don’t come out right. I mix them up or say something I don’t mean to say. Or the words don’t come out at all. I need time to process before I speak in social situations. There was no time here. I was in a situation and my brain couldn’t handle it.

My body went into panic mode.

I could feel the stress response flooding my entire being. My face was burning and I could feel cold sweat running down my upper arms. You know those embarrassing sweaty patches that appear on the underarms of your shirt? That. With bells on.

My heart was thumping out of my chest.

My mouth was dryer than a camels hoof.

I wanted to vomit.

I needed a really BIG wee.

My eye tic kicked in.

My body was reacting as if a drooling tiger was standing in front of me. I was powerless to stop what was happening to my body. Nor could I run from it. I had no option but to endure it..

In the background, I that noticed the other girls were nudging each other doing that giggling thing that a lot of girls do. They looked at me, then they’d look away and giggle some more.

*confused face*

I wanted to run as fast as my size fours would carry me but I couldn’t move.

During fight or flight some people run, others fight. Some just freeze.

I froze.

I’m a freezer.

Freezing is generally a primeval attempt to stop a predator from seeing you. The problem was that the predator had not only seen me, but was tucking into my innards – theoretically speaking. I think this means that should I find myself in the direct line of an articulated lorry – I may quite likely be run over.

I don’t remember anything after that, as is the case with anything traumatic.

Some of you might read this and think ‘Traumatic? Oh get a grip you silly cow!’

I get that it sounds ridiculous but you’ll either understand this or you won’t but the definition of traumatic is deeply disturbing or distressing.

To me, it was traumatic and my body reacted accordingly.

Some days later, one of the girls confessed that they’d asked the man to act as if he knew me – for a laugh.

I was the joke.

Am I missing something here?

Were those girls being funny?

Or were they being mean?

To this day, I don’t know.

I never went out with them again.

Why would I want to?

I didn’t understand their language. They literally giggled at EVERYTHING, which I found irritating. I don’t giggle. If something is funny, I laugh. Sometimes until a bit of wee comes out. Granted, some of this is down to a compromised pelvic floor but mostly it’s because I laugh from my belly. Giggling to me is like water crackers, as in, what’s the point?

So, I was being publically humiliated and apparently it was hilarious.

I get that I am different. I’ve always known it but I’ve tried my hardest to fit in. The trouble is that the harder we try to fit in, the more we make ourselves stand out.

Back then I didn’t have a clue why I couldn’t fit in.

Now I know it’s because I’m autistic.

I’m the misfit.

The odd one out.

Or I was..

Then I found my ‘tribe’.

People who get me.

People who understand everything I say and do.

People who don’t look at me as if I am a moron.

People who will read this post and think, ‘Yeah, me too!!!’

People like me.

I go back through my life and wonder, could have done things differently? The answer is no. My brain will always react the same way because it’s wired up differently to the neurotypical brain. I am what I am and all that shit and as Gloria Gaynor says, ‘What I am needs no excuses’.

Me, the reboot, doesn’t push myself to socialise like this anymore. These days, I reserve my energy for people who deserve it. I no longer say yes to things I don’t want to do in order to fit in. I no longer make excuses, nor do I have to provide an explanation why I don’t want to do something. I politely decline the offers (not that there are many) and mentally high-five myself for putting myself first.

I bang my own drum
Some think it’s noise, I think it’s pretty

I Am What I Am ~ Gloria Gaynor

 

 

 

 

 

 

 

Christmas and the Autistic Child

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Most children like Christmas right? For many on the autistic spectrum, Christmas is a stressful time of year. The inevitable changes to routine are enough to send some children spiralling into one meltdown after another..

Same for autistic parents.

The Boy’s anxiety has been climbing for weeks. As soon as things change at school his behaviour deteriorates. He’s on a VERY short fuse and the simplest of requests, like taking his coat off, has him throwing stuff and stomping off upstairs screaming that he wants to DIE. He’s eight going on thirteen only this is him BEFORE the hormones kick in!

Can you imagine when they do?

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Trip hazard? Or my son when the testosterone kicks in?

The Boy’s need for me is ever greater as he battles with a brain that struggles to cope with Christmas. He likes Christmas but struggles with it just as he struggles with a lot of other things he likes.

There are no decorations up at our house yet as we’re trying to keep stimulus to a minimum and my anxiety is so bad that the mere thought of them makes my heart race. The control freak within me struggles to allow other people to do it and in the past when I have let the kids, er, ‘help’, I have stood there fighting the urge to rugby tackle them to the floor in order to prise the baubles from their clammy little hands. *whispers* I re-did it once they were in bed. It’s something I don’t like about myself but it’s a pathological need for certain things to be aesthetically pleasing in my eyes.

When it comes to visiting Santa, forget it. It’s a sensory nightmare.

Queuing = Hell.

Noise = Hell.

Migraine inducing fairy lights = Hell

Sitting on Santa’s knee. Do they still do that? = Hell.

I hated it as a child. The Boy managed one minute in a queue once and we had to leave. Do your child and yourselves a favour and go to an autism friendly session where the visits are timed, you can take your own present. Visiting Santa should be a pleasant experience for every child, no?

There are things you can do as a non-deranged parent to make things a little easier for your autistic child.

Decorations

  • You can involve your child in buying decorations or letting them help you to put them up.
  • Introduce the decorations gradually. It’s probably best not to have it looking like Santa’s Grotto if your child gets easily overstimulated.
  • Give some thought to your Christmas lights. If your child is very sensitive, a migraine inducing strobe effect probably isn’t the best idea. Static or gentle fade in and fade out lights will be more appropriate.
  • Use countdowns for putting the decorations up and taking them down.
  • Use social stories and visual calendars.

Visiting Santa

  • Check your local papers/social media for autistic friendly Santa-sessions

Presents

  • Mountains of presents will overwhelm most autistic children so it’s best to limit how many they get or don’t put them all out on Christmas Day.
  • If your child has sensory issues pay attention to the paper you use to wrap the presents with.
  • If unwrapping make them anxious then don’t wrap them at all.
  • Place a familiar toy next to the new presents.
  • Try some gentle classical Christmas music in the background especially if classical soothes them normally.

Family

Don’t feel under pressure from your family. If you know your child can’t cope with a big family get together on Christmas Day, then don’t be afraid to tell them to sod off – albeit politely. Your child’s well-being has to come before Great Aunt Ada parking her arse on your sofa all day scoffing the Quality Street eh? Life is different when you have an autistic child. If people get it, great. If they don’t, educate them until they do get it. Maybe give them a book on understanding autism as a Christmas present?

Familiarity

Christmas Day is just the three of us. There are no visitors. There is no Christmas dinner with party hats and other such paraphernalia. The Boy has his usual food and bedtime is the usual time with the usual ritual of a story and his Classic FM.

The Rules are that there are NO rules when it comes to autism. Each person is different. Some love Christmas, some don’t. All autistic people are affected but not necessarily in a negative way.

Me? I find Christmas stressful BUT it’s also the season of fairy lights and I BLOODY LOVE fairy lights!!

As a child I used to lie on the floor under the Christmas tree and stare at them for hours on end. My Nan, having downed a few brandies, would say, “You’re a funny little girl” I used to wonder why she was calling me funny when I hadn’t said or done anything funny. Now I know she was calling me weird. MY OWN GRANDMOTHER!!

Christmas is difficult for me in ways which most people wouldn’t understand. I’m not a Christmas hater – it’s just that there is too much going on and that sends my anxiety orbital. Social media is crammed with Christmas. TV is bombarding us with adverts/mini-movies for the hard sell and it gives me a headache. If I could cherry pick bits of Christmas it would be lights, carols and the act of giving. You can keep the crowds, commercialism and my pet peeve, ‘Secret Santa’.

I don’t suppose it helps matters that my father decided to shuffle off his mortal coil on a Christmas Day. To lose someone you love on any day of the year is bad enough but to lose them on Christmas Day is epically crap. The image of Dad’s lifeless body while Noddy Holder screeched “IT’S CHRISSSSSSSTMAAAAAAAAAAAAAAAS” is forever seared into my memory and while I fight to bring forward the memories where he was the life and soul of Christmas, this one always wins.

As regards The Boy, we try to keep things as close to normal as is possible. Whatever ‘normal’ is.

Header Image via Creative Commons

 

 

Not Being Me

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I was a misfit from the moment I started school at five years old. Why five? Well because it was just me until then – me, the Golden Labrador next door and my fabulous inner world. I had no reason to know I was different.

Since then life has been difficult at best. At worst, it’s made me ill.

I’ve always had anxiety right from as far back as I can remember. As a child I was generally so pale, I looked as if I’d been exhumed and I had one ailment after another. I didn’t understand it was anxiety at the time and I feel sorry for Little Me because as bad as I feel now at least I know why I feel like I do. Whereas Little Me didn’t have a clue and was very scared.

I couldn’t tell anybody. How could I when I didn’t know how to?

I don’t know what it’s like NOT to have anxiety in some degree or other.

The things that most people do effortlessly are challenges for me. As soon as I go through the front door I have to pretend to be normal – whatever normal is. All I know that after 40 odd years of observation, on a good day I can pass for ‘normal’. On a bad day you’d be sending round the ‘special van’. This is because pretending to be normal takes effort and it’s exhausting. It exhausts body and mind and after all this time, well, I’m knackered!

Online I get to communicate without the problems I get when faced with actual human beings. The barrier between me and the outside world allows me to interact in a way that I’m unable to in life without making myself stand out. So what I am going to say may come as a surprise to people who interact with me online..

You see, for most of my life I have been aware that I am different but I’ve never known why. I must have spent hundreds of pounds trying to find myself within the pages of self-help books. Bouts of anxiety and depression over the years have led to therapy but therapy for what?

I never knew what was wrong with me and it REALLY bothered me.

My list of problems is ENORMOUSLY LONG but here are a few things..

Things like..

Avoiding answering the door or the phone.

Being unable to walk into a room full of people.

Certain materials make me feel so irritable and uncomfortable. (Nylon? *boak*)

Struggling with eye contact until I was in my 30s.

Having too much empathy.

Being constantly bullied as a child and teenager.

Not being able relate to most other girls.

People calling me weird including the local pisshead and it must be bad when the local swiller tells you you’re weird, eh?

Shutting down when overwhelmed. (selective mutism)

Escapism being VITAL to my mental well-being.

Soaking up people’s moods up like a sponge. (You’re having a shit day? Then so am I)

My body reacting in the same way no matter how many times I do something.

Why I am obsessive in thoughts and interests.

Why my ‘imaginative’ play only ever involved imitating what I’d seen on TV programmes or films.

My mood going from euphoria to despair and everything in-between in any 24 period.

Having to observe and copy in order to fit in.

Why I have picked at my skin so much that I have scars.

Always feeling a sense of unease. (WE’RE DOOMED!)

Always feeling the odd one out.

Catastrophic thoughts about everything.

Questioning why I am here.

ALWAYS feeling that I was not meant for this world..

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Moi.

You get the picture?

So I had resigned myself to being a weird sod. One of life’s oddities. A misfit.

Then we took The Boy to be assessed for autism and from the questions they were asking I knew that I was autistic.

LIGHT BULB MOMENT!

For almost four years I debated whether I needed a formal diagnosis. Many people are content to just know that they are autistic and trust me, most people know. For me, it wasn’t that simple because some of my issues have become worse as I’ve got older and one of my fears is being thrown into an old persons home where I would die within a day because of the social aspect.

Also, I needed validation.

So last year I was assessed and in February this year I was formally diagnosed as autistic and the relief is immeasurable. I’m not weird. It’s just that I perceive the world differently.

What’s more, I am not so alone as I have always thought..

Last year I went to the autism show in Manchester and it was while I was there that I came across Peter Street. Peter is a national and international poet and was diagnosed late in life as autistic. Peter was one of the speakers on the day and spoke of his experiences at school and his diagnosis. Hearing his story helped me to make the decision to go for assessment because I could see how much it had helped him and he was older than me when he was diagnosed so I knew it wasn’t to late for me. So, thank you Peter.

Peter also passed round a poem which was written for everybody on the spectrum. I have this on my kitchen wall and read it every day..

Not Being Me by Peter Street

Childhood nights were dreams
of being a sheep
then up and out of a morning,
a quick check to see

if by any chance in the night
there had been a change
of being just like all my friends
and not the odd one out

like afternoon dance lessons
spent hidden
in the toilet
out the way because

I couldn’t dance the sheep steps
that’s why I dreamed
of being a sheep
so I could be like everyone else

I listened to this poem and cried because I understood EVERY word of it. How many times as a child had I prayed that I would wake up and be like everyone else? However, I wasn’t like everybody else and now I know why. All these years I’ve been fighting against my own brain. Is it any wonder I feel so tired now?

So, as a wise man from Manchester once said…what difference does it make?

Well, it just means that I have a formal explanation for why I struggle so much and hopefully I can get some support as I get older because I really am scared of having to live in Shady Pines and having to play bingo and shit like that.

I’m still me. It’s just that my reality differs from yours. That and I touch plugs waaaaay more than is healthy, y’know?

So there you are..

I’ve outed myself as the autistic human I am and have always been.

Thank you for reading.

Not Being Me poem used with kind permission from Peter Street.

Peter’s website

Listening To The Dark ~ A Selection Of Poetry ~ Peter Street

Images via Creative Commons